Families losing “battle” for support


Families with disabled children are at “breaking point” because they are not getting the support they need.

Following the publication of the Government’s draft Children and Families Bill, a number of leading charities have come together to warn of a chronic shortage of services at a local level. The charities, including Scope, The National Autistic Society, Sense, 4Children and The Family and Parenting Institute, say that the changes in the Bill do not go far enough and will not protect those with disabilities and SEN from massive cuts to services.

Scope has published a new report, Keep Us Close, based on the experiences of 600 parents of disabled children. The report shows that 62 per cent of families with disabled children are not getting critical support such as childcare or nursery places, appropriate schools, essential therapies or healthcare in their local area. Nearly half of parents (49 per cent) said they had to wait a long time before they received any support.

The process of getting their child the right services was described by 60 per cent of respondents as a “battle”. Of the families who were unable to access services locally, 80 per cent said it caused them stress and anxiety. More than half (51 per cent) said it had a negative impact on their ability to work and meant they missed out on family activities, such as birthdays and playing together.

Welcoming Scope’s report, Mark Lever, Chief Executive of the National Autistic Society, said that “too many parents of children with autism have to battle to get their needs recognised, understood and met.” Mark Goldring, Chief Executive of Mencap, echoed these sentiments, saying that people with learning disabilities and their families “have real fears about their finances in the future.”

The draft Bill, the SEN Green Paper of 2011 and a number of other Government initiatives have done much to raise the profile of SEN and disability issues and place them on the political agenda, yet many campaigners fear that ministers are missing the chance to push through the kinds of reforms that would make a dramatic difference to the lives of young people and their families. “The Government has a once-in-a-generation opportunity to end the daily struggle parents of disabled children face”, says Richard Hawkes, Chief Executive of Scope. However, he warns that at the moment, the Bill “doesn’t go far enough and won’t plug the gaps in local services that families with disabled children desperately need.”

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  1. This is so true. Our autistic daughter has been in a unit since April as the LA took her out of her last placement as there were issues there. We have been asking for support at home since May, and haven’t received anything at all. We don’t know why. She likes two people with her at all times, for safety and security, so when she is home with me when my husband is in work during the week, we are prisoners in our own home. It is so unfair. She likes walking, and going to different activities, and while she is in the unit she doesn’t get the chance to access all this.
    I would love to be able to take her, but without another person to help, it is impossible.

  2. We have been refused any kind of support countless times now. Social Services can loophole children on the autistic spectrum too easily it seems regardless of what the childrens act etc states as they are allowed to interperate it however they please. Even if a case is more paramount as a sole carer is also disabled themselves!

    Brick wall after brick wall yet your child is too complex for most voluntary agencies or they just dont have the resources. I have admittance in black and white that 1 authority did not give support to kids with certain diagnosises etc as a rule which is discrimination blaitantly due to their diagnosis and they werent really interested in doing a propper assessment(most was actually done over the phone, depending on 3 yr old assessments from some key professionals)!

  3. I enjoy reading your publication and was saddened by the statistics mentioned.I have a daughter with learning difficulties aged 29 and a grandaughter with cerebal palsy aged 11, I also foster a 13 year old woth a learning disability and unfortunately the only difference from then to now is that I know I am going to have to fight all the way to get any help for those I care for and I am ready to challenge even proffessionals if need be. Wouldnt it be so much better if I could say that things were moving forward and the support that is wanted and needed is there and is well signposted, unfortunately that is not my experience as a paren, as a grandparent as a foster carer or in my professional role as a nursery manager.

  4. This is so true, I have been trying for the last 5 and half years to get assessments done for my son, who is now 8. I took part in clinical research with him at kings college and was told by the specialist there that she feels its ODD with bits and pieces of other issues, she couldnt diagnose as it was clinical research. No one is willing to listen or view the physical evidence of the meltdowns (cuts/bruises etc) i get no support at all from anywhere, he also doesnt sleep very well, 2.30am is an early night here so its affecting his schooling and the rest of the family.

  5. This is a well written article and so very true, I dont understand why some schools my daughters in particular referred her to camhs where she was diagnosed asd, then reffered her to the occupational therapist which was a waiting game again, yet since diagnosis school dont seem to see her as a child with sen why send her in the first place or is because they just dont have the resources to manage. Mainstream school is not the right environment yet neither is a special school children on the spectrum deserve a school of their very own and personally I feel its discrimination that my daughter needs a statement in order to have an education whereby she feels safe and happy as the adults in her school just dont get me (her words not mine) she is 7 years old and such an inspiration to me. It is also disgusting how you get diagnosed then wham your on your own get on with it and read all these leaflets. Rant over apologies for this however as you can tell I am a little let down right now.


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